Director’s Perspective
It was July 2022, and I had just finished my first year as the Director of the Stony Brook University Leadership Education in Neurodevelopmental and Other Related Disabilities (SBU LEND) Program. Invited to present on the Research Panel for the I-ASC Motormorphosis conference, I felt a tap on my shoulder from the 6’5” nonspeaking panelist, Isaiah Grewal (Iz), beside me. I had just responded to the query, “Do you have any research questions about nonspeakers and their experiences you’d like people to study?” As a practitioner-researcher, I discussed that due to inaccessible communication modes or lack of communication modalities, many nonspeaking individuals, who are my clients, wander. This primary means of communication is often misunderstood and relegated to lack of intelligence, sudden mood changes, aggressive behavior, and not recognizing danger. The current literature on wandering fails to account for elopement as communication. My National Science Foundation grant examines elopement by individuals with autism and other developmental disabilities through the creation of a predictive screener using a gait sensing system and physiology to relay nonspeakers’ intent to leave an environment. As I provided this response to the audience, Iz was tapping his finger fiercely. He shared that he eloped from school because teachers spoke about his perceived lack of intelligence in front of him. This gross presumption of incompetence triggered fight or flight response. The trauma of this repeated situation and the empirical studies that fail to include typists’ perspectives on communication (such as elopement) skews product development, cognition research and education. How could we begin to quickly make systemic changes with non-speakers?
Isaiah with his 2024/25 LEND faculty and classmates at on-campus orientation
Fast forward four years later to our 5th Annual LEND Research Exposition, and the majority of the presentations by graduate and postgraduate students, healthcare professionals, self-advocates and families included nonspeakers or addressed research gaps due to their lack of inclusion. This shift in perspective, understanding, and attention to nonspeakers is now commonplace in the SBU LEND due to Iz’s programmatic contributions and vibrant participation across two cohorts. Funded by the Health Resources and Services Administration, LEND provides four levels of training to improve the lives and care of individuals with autism and other neurodevelopmental disabilities, without cost to participants. This is accomplished by preparing trainees from a range of professional healthcare disciplines, families, and self-advocates to be leaders in their fields, by ensuring the delivery of high-quality evidence-based care, by maximizing inclusion of traditionally underrepresented groups, and by cultivating high levels of interdisciplinary clinical competence. LEND focuses on the policy, advocacy, research and clinical skills necessary to affect positive change from the individual to systems.
At the heart of the SBU LEND are our self-advocates. Self-advocates share their lived narratives and the obstacles they have faced due to inequities and barriers in healthcare. Iz, a LEND advanced medium-term trainee (completing 150-299 program hours), first participated on the Transition to Medical and Dental School Patient Panel at Stony Brook Medicine, sharing the quality health and dental care he received and the adjustments needed for healthcare environments to become sensory-friendly and conducive to shared decision-making for nonspeakers. He next created “Tips for Communicating with Nonspeakers over Zoom” for his LEND fellows. From using the chat appropriately to the timing of a response in small and large group discussions, our cohort of physicians, family members, nurses, and other professionals, alongside speaking self-advocates, quickly learned and practiced culturally responsive communication with nonspeakers. Our Core Faculty, enthralled with Iz’s communication, immediately referenced his etiquette guide and requested to attend our didactics addressing apraxia, clinical strategies and research regarding nonspeakers who can and cannot type. A SBU LEND didactic assignment involved creating an Interdisciplinary Team Code of Ethics. Extracts from Iz’s Code include guidance like “Interdisciplinary Teams shall value the lives of all Autistics regardless of that person’s perceived ability to earn income; Nonspeaking Autistics especially deserve the most courageous support from Interdisciplinary Teams, especially in circumstances when the Nonspeaker’s caregiver insists on assuming incompetence; and Historically, speaking team members have dominated our collective expression, but nonspeakers must also be given a chance to input.”
Isaiah and his Faculty Mentor Vikram Jaswal at the 2025 Motormorphosis Conference
To our knowledge, Iz is the first nonspeaker fully included in a LEND at this training level. His impact on the SBU LEND is substantive and significant, referenced by his peers as “life-changing” and “who I learned the most from.” Iz’s graduation tribute to his LEND cohort exemplified the mutually beneficial exchange. Their faces watching and listening to his speech app’s voiceover of his typed words give me profound hope that the next generation of LEND healthcare professionals, families, and self-advocates have been forever changed by the intellect, ideas, and honesty of Isaiah Grewal.
Typer’s Perspective
Eight years ago, as part of a conference breakout session led by Professor Vikram Jaswal, a 15-year-old me shared that I wanted to spend my life doing autism research. Professor Jaswal didn’t laugh even though no nonspeaking autistic had yet become a Researcher back then. Instead, he asked me, ‘What kind of autism research?’ I didn’t know because most of my school life, until I turned 13, had been filled with ceaseless repetition of mundane data like the weather and appropriate clothing for it. Although my mother started homeschooling me, trying to help me catch up in all subjects, I did not have enough education to know enough about autism topics to choose one. By the time I met Professor Jaswal, I was really ready to learn what it would take for me to become a serious autism research collaborator. I started earning college credit through Harvard Extension School. Then I was told about SBU Medicine’s LEND Program by Dean Ballan. At first, I was so excited reading about all the great topics that would be covered. Public health! Diagnostic history of autism! Research seminars! But next, I was filled with doubt. Could I keep up in lecture discussions with classmates who were doctors, credentialled therapists, and academics? Good thing Director Ballan so kindly welcomed me with her no-problem-is-unsolvable attitude. I braced myself for the usual stressful Disability Accommodations interview, but Dean Ballan already knew so much about nonspeaking autism that everything I needed started rolling into place, once I committed, without me even having to ask. When I showed up on campus the first time, it was a dream come true. The classmates and faculty were all understanding, even when I needed to stand up and walk around at quiet times. Once the program started, my life became a wonderful rhythm of academic readings to prepare for Monday night Didactic lectures. Three hours passed quickly on those lecture nights. And I also got to start on Professor Munoz-Laboy’s amazingly educational Research Seminars series. So far, I’ve learned about the difference between qualitative and quantitative research, how to structure effective research surveys, and how to write a good research question, to name just a bit of my newly acquired knowledge. And we also get Faculty Mentor guidance, and guess who I got assigned? Professor Jaswal, who is now SBU LEND Psychology Co-Core Faculty! Through his lead, I am now a researcher on the TYPE Project, the world’s first with nonspeaking autistics as co-designers, not just consultants. This past year in TYPE, I’ve learned academic coding from Professor Kristen Gillespie-Lynch, participated in creating my first conference poster for INSAR 2026, and made some slides that our team presented at the 2026 CUNY Neurodiversity Conference.
The authors at an on-campus seminar
Research grant applications are now given merit for community representation. But nonspeakers are neither omniscient nor psychic. To truly be helpful research collaborators, we must first be educated on how rigorous research is conducted. We must also learn how to digest academic material, so we can do catch-up readings to keep up in team meetings. And we must start with some foundational knowledge in medical history, public policy, and medical professions. I have learned all these topics and more in SBU LEND and look forward to adding even more knowledge to my research collaboration arsenal as I continue the Program.
Isaiah Tien Grewal is a Trainee in the LEND Fellowship Program at Stony Brook Medicine School of Social Welfare. Michelle S. Ballan, PhD, is Professor and Associate Dean for Research at the School of Social Welfare and Director of the LEND Program at Stony Brook University. Correspondence may be directed to Isaiah Grewal at isaiah.grewal@stonybrook.edu and Michelle Ballan at michelle.ballan@stonybrook.edu
